Newly diagnosed

[dzinr38]

Hello. I was diagnosed with IC about 2 weeks ago, and have been struggling ever since. I have been home from work all this week, and actually wasn't able to do any work from home until yesterday. I started having problems about 2 years ago, immediately following a hysterectomy. I can't help but wonder if the damage was done during that surgery, because they did have complications and I was in surgery 5 extra hours. I also notice that there are no support groups in my town, so I may have to rely on the message boards. Any assistance that can be provided would be appreciated. Mainly, I would like to know if there is any type of pain reliever that can be taken to help with the pain of IC so that I can get back to work. It seems doctors just have not been real helpful. I was put on Elmiron and told they will see me in 6 months. Just great. What do I do in the meantime? It will be so nice to talk to others that understand the pains of IC. I look forward to meeting a lot of you online.

[dzinr38]

One thing I also forgot to ask. Do any of you ever suffer from high fevers with IC?

[traceann]

Hello and :welcome: to the gang! The hardest part is the beginning at and around diagnosis. Funny you should say you were handed your Rx for Elmiron and told see ya in 6 months. That was pretty much my experience as well, only I was told 3 months. :biglaugh:

This site has been my lifesaver. No doubt about it. I too have no support groups in my area (I live in a pretty rural area), so this was my link. I learned so much from this place, it's amazing. All my self-helps were discovered here. I really hate to think what life would be like if I hadn't found this great group! The only "remedies" my doc told me about (and that was from reading a skimpy handout he was giving to me) was to watch what I eat, try baking soda in a glass of water if I eat something I shouldn't have and buy Prelief. Okie dokie. Thanks a bunch, lol!!

So, here's what I learned here that has gotten me through some very rough times:

Heating pad/Thermacare heat patches - a must have for all ICers, lol. I think most of us are best friends with our heat sources, they can have such a calming effect, it's wonderful

Baking soda/Tums - drinking a 1/2 to 1 tsp of baking soda in water can really help calm the bladder and Tums do the same thing. I use baking soda at home and Tums when I travel etc. (Be careful if you have salt-sensitive health issues though with the baking soda.)

AZO Standard/Uristat - Over the counter pyridium. It's an analgesic for your bladder/urethra, numbs things up nicely. Helped me with pain, frequency and the urgency feelings. But, does make your urine a bright orange, so make sure you protect your underwear. And it's not for long term usage, the directions state a max of 2 days. I did take it more than that at first, but I discussed it thoroughly with my doctor beforehand.

Diet Diet Diet!! - the BIGGEST tool in my self-help program, what we eat can greatly affect our bladders - frequncy, urgency and pain-wise. Here's a link right directly to the IC Diet foods list:

http://www.ic-network.com/handbook/diet.html

What was suggested to me when I first came here a little over a year ago, was to strictly eat out of the "Usually Ok" list for a few weeks or however long it took to get my bladder a bit calmed down. Then I started adding in things from the "Maybe Ok" list, one at a time and a few days apart. If I had an increase in symptoms, the food went on my no-no list to be retried at a later date. If it failed the second test down the road, it went on permanent no-no list. It does take time and is frustrating sometimes, but so very worth it! And good news is it's only super-restrictive in the beginning, it does get better as you start re-introducing foods. It's just a month or two of boring, just so your bladder has a fighting chance to feel better. And, I discovered there were many more things I could eat than I ever dreamed I could when I started the diet project. Whew!!! :woohoo:

Here's a link to the Patient Handbook as well, loads of information there! Only take your time and don't overwhelm yourself, there's lots to go through!! :)
http://www.ic-network.com/handbook/

Once again, welcome and glad you found us! I hope this little bit of information helps, and I know others will chime in too!!! Not to mention I am sure I am forgetting something! :biglaugh:

Hugs!
:)

H

[Sarojini]

Traceann has given you some great advice, especially the link for the Handbook and the Diet. ;) Please read them.

As for high fevers, have you been checked for a UTI or any other type of infection? This is not a normal symptom of IC. If you were diagnosed via cystoscopy with hydrodistention, or even a potassium sensitivity test which involved a catheter, it's possible you've developed one--any time anything is inserted into the urethra the possibility of infection is there.

[patricia1]

Hi and :welcome: . Sorry that you were diagnose with IC. But Traceann did give you lots of good advice to get started with.

Like Jen stated high fevers are not associated with IC. Some people tend to run a low grade fever or have slightly higher normal body temp but to run a high fever is not normal.

I hope you start feeling better soon. I also take Ultram for pain. It is a non-narcoctic pain med but it attaches to the brain the way narctic do. Although it tends not to last as long.

[dzinr38]

Thank you all SOOOOOOO much for your warm greetings and great advice. I did have the one test done last week (I think it is called PST), by a urologist, and my regular internist suspects that I may have developed an infection, because I have had the high fevers. I had a test run 2 days ago and am still waiting to hear back from the doctor. It's very frustrating, because I keep waiting by the phone, and still receive no call back from the doctor. I called this morning and told them that I wanted the doctor to call me with any information, no matter what, because I'm tired of the high fevers. It's dragged me down all this week.

I am on Tramadol for pain, and sometimes it helps, sometimes not. I also bought a few books on IC that I have been reading. One lists out all the different types of foods and if they are ok, maybe ok, or not ok. This entire week, I have tried to stay away from the bad list. Hopefully, that will help. Since this is so new to me, it is frustrating and I think the main thing is to get to a point where I don't have so much pain and can put in my normal 40-hour work week. I definitely cannot afford to lose my job, since I am the main breadwinner of the family. :(

Thanks, again, for all your support!! Oh, and I did look through some links on the Patient handbook, but a lot of them were broken links. Hopefully, they will update them soon.